I Have A Rare Autoimmune Disease

Don’t even bother trying to pronounce what I have, because I can barely get it right and I’ve had it for 11 years. It’s called Wegener’s Granulomatosis, a rare autoimmune vascular disease that primarily eats up your sinuses, lungs and kidneys. It can also chew through your joints, ears, eyes, skin and internal organs as it pleases. It’s in the same autoimmune family as lupus or rheumatoid arthritis, except invitees at this family reunion might seem kind of bummed when you and your unpronounceable German disease show up at the door. When I was first diagnosed, I said, “Weg-huh-nuh-what? That sounds like a Nazi disease or something!” Turns out, Friedrich Wegener was a Nazi doctor who named my form of vasculitis back in the 1930s. He wasn’t even a Nazi by force. He was a Nazi for fun. Wanted for war crimes and everything. No wonder there’s a movement afoot to change the name to something zippy like “ANCA-associated granulomatous vasculitis.” But let’s just go with WG for now.

Autoimmune disease is like a mean girl living inside you, telling you you’re lame and worthless and destroying your tissues while she’s at it.

Back in 1999, when I was a TV producer and comedy performer burning the candle into a pool of unrecognizable wax, I contracted a sinus infection that wouldn’t go away. Eventually, I was in so much pain that we did a scan, found a tumor in my sinuses, and had it biopsied. I was sent to a rheumatologist who diagnosed Wegener’s, and ordered me not to go on the internet and look it up. Naturally, I ran home and looked it up on the internet. I can still hear the “screeeee-ch, screeeee-ch” of the dial-up modem. This was 1999, people.

Autoimmune disease is like a mean girl living inside you, telling you you’re lame and worthless and destroying your tissues while she’s at it.

You’re the reason you’re sick. Basically, your immune system, always ready to attack a bully (i.e., virus, parasite, mutation), misreads the signals and thinks there’s something wrong with you when there’s not. It sends out a whole bunch of immune cells on a kill mission. But there’s nothing to kill. So your soldiers My Lai innocent cells—in my case, those living in my sinuses, nose, ears, brain lining and lungs. Clumps of tissue called granulomas grow, inflaming blood vessels. Blood can’t get to organs. Organs start to fail. You fight WG with club-size drugs like chemotherapy and anti-inflammatory steroids. Sometimes these drugs work great, and kick that autoimmune disease to the curb. Often, they kick you with it.

I blew up with 40 pounds of water retention and emotional eating, and went crazy from the huge doses of steroids. My hair fell out and my skin peeled apart from the chemo. I consulted with doctors across the country, but they had few options to offer. There just wasn’t that much research available on WG. To offset the side effects of the medication, I turned to alternative healing modalities. Acupuncture, ayurveda, yoga, vitamins, meditation, craniosacral massage, astrology … my observant Jewish parents begged me to consult with a rabbi who suggested I rub pigeons on myself to absorb the toxicity in my body. Don’t think I didn’t consider it. I was sick and desperate. For a while I debated drinking my friend Carrie’s breast milk, rumored to have insane immunity building properties, then decided that her baby needed it more. (You’re welcome, Lila!)

Besides the fact that I was dealing with a potentially lethal illness that was getting worse, not better, I didn’t know how to connect with my body. My body sucked. It had been fat for most of my adult life, so I hated it. Then I stopped hating it and wrote a book about it, called The Fat Girl’s Guide To Life. The writing/thinking process gave me a true mind-body reboot: I didn’t have to love my body, but I could certainly respect everything it was capable of. So I was down with my bod when this whole WG thing happened. Forget fat; now my body was sick. I started hating it again. I was sick, and sick of myself. My hope was that I could finally find someone who could fix me. I thought if I could just find that guy, that doctor, healer, wise man/woman, guru, I’d be healthy and happy again. It never occurred to me, “Maybe that guru is me.”

Eleven years and many semi-gurus later, I’ve come to realize that no one person has all the answers. But if we’re talking specifically about answers in relation to me and my health … then in that sense, I believe I’m my own guru. I’m the expert on me. I know more about me than anyone does, from how I form my spiritual beliefs to how many Vicodin I can take before turning into Amy Winehouse. I finally realized that no one person was going to heal me; I could take a little bit from here, and a little bit from there to make the individual treatment plan that works for me.

Since I’m so damn smart, let me share the wise things I’ve figured out on my journey. There are over 30 million women in this country with autoimmune diseases like mine. Many of us are of childbearing age. Many of us have become so detached from our bodies due to dieting and discontent that we have no idea how to assess ourselves any more. If you think something is wrong, then pay attention and trust your instincts. Find a new doctor if yours won’t listen. Move on to the next healer if the one you’re working with says he can’t help because you’re too skinny/tall/short/fat. Let go of un-friends and not-so-loved ones who knock your self-esteem and dismiss your legitimate health concerns.

Thanks to an excellent medical team, a miraculous drug called Rituxan, some phenomenally talented healers, a group of friends and family members that stuck by me through thick and thick, and some spiritual reassembly on my part, I’m in remission now. I don’t know how long it will last. I had surgery to fix my face and I hope all the parts will stay where they’re supposed to stay. My liver freaked out for a while, but now it seems stable. I can walk and breathe and dance and sing “Like a Prayer” at Madonna karaoke night. I’m grateful that every day, my mind/body connection grows that much stronger. I have Wegener’s Granulomatosis. But I also have hope.

Wendy Shanker’s newest book is called Are You My Guru? How Medicine, Meditation & Madonna Saved My Life and it is on bookstore shelves this week. Find out more here. And for more information about Wegener’s granulomatosis, click here.